It is often advised to take parental leave so that:
- you can get to know your baby and his or her reactions;
- you can get your family organised;
- you can get used to the “techniques” needed for your baby’s treatment: getting foods/medicines, preparing milk bottles, placing a nasogastric tube, using the enteral nutrition pump (if necessary), placing urine bags, etc.
- and, especially, so you can gradually learn about your child’s disease and treatment and solve your doubts and questions.
You can apply for a daily parental presence allowance (AJPP) if you have to stay some time away from work to take care of your child in the context of parental presence leave, if you work for a third party. This requires a detailed medical certificate from your attending physician, as well as a special form for AJPP from the CAF, which establishes the need for special treatment and your presence at your child’s side. These documents are to be submitted to the CAF, which will forward them to the Primary Sickness Insurance Fund (CPAM, Caisse Primaire d’Assurance Maladie) advising doctor, who will decide whether to accept your application.
You need to plan ahead. Send the prescriptions to AGEPS well in advance to make sure you get the products you need on time! Stock up on enough foods and medicines for the duration of your holidays.
Let the service provider know so you can get all the equipment you need.
Depending on the destination, ask your attending physician if he or she has a local colleague who can be called upon in the event of decompensation.
Always carry the emergency certificate, emergency and semi-emergency diets, and emergency or semi-emergency diet products on you so that your child can be treated quickly at the local hospital. There are very few summer camps (when your child is the right age) where your child’s diet and disorder can be monitored properly. Seek the advice of your attending physician.
Your child can practise all sorts of sports as long as the effort is not too intense. Let him or her choose a sport that matches your child’s rhythm! The diet can be adjusted before starting to practise sport.